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Last week was the AIDS.gov Federal HIV/AIDS Web Council (FHAWC) meeting, which brings together web, content, and communications leads from federal agencies with HIV/AIDS portfolios. Susannah Fox from the Pew Internet & American Life Project gave a presentation about communities of color to the FHAWC. Below is a blog post that recaps her presentation.

Serendipity brought me two opportunities this week to present Pew Internet’s data on communities of color and young people, particularly as it relates to health. On Wednesday I was a guest of the Federal HIV/AIDS Web Council and on Thursday I spoke at a meeting convened by CommonHealth ACTION. I’ll share some insights I picked up at each event along with the data I presented.

My story in both settings was essentially the same:

The most important source of information for people making a day-to-day health decision, in many cases, is not a website, or even a clinician, but another person who shares the same condition. As mobile, social tools spread throughout the population, people are connecting with each other. Why not harness those tools for health?

Pew Internet’s evidence for the mobile focus:

83% of U.S. adults own a cell phone.

35% of U.S. adults own a smartphone and one-quarter of them use their phone as their main source of internet access.

This trend is especially pronounced among adults ages 18-29, adults who identify as black, and adults who identify as Latino.

Text messaging is an epidemic among 18-24 year-olds. This group sends or receives an average of 109.5 text messages PER DAY.

Black and Latino cell phone owners are more likely than whites to send a high volume of text messages.

Small screens outnumber big screens all over the world and certainly among young people, African Americans, and Latinos in the U.S.

I loved that the CommonHealth ACTION event organizers invited a panel of college and graduate students to follow the “expert” panel since this was an event focused on youth. Each student was asked to talk about their favorite piece of technology – unanimously, it was their cell phone, which serves as their alarm clock, their social hub, their music source, their project manager, their flash cards, and even their spiritual touchpoint. One student talked about how she relies on her phone for daily devotions. Another said, “As long as I have my cell phone, I’m OK.”

When asked how they would react to a week without their cell phone or internet access of any kind, students described brushes with this uncomfortable state. A damaged phone led to the realization by one student that he didn’t even know his mother’s phone number. Another described how, when she lost her phone, she rushed to a computer so she could post an urgent status update letting people know that she would be unreachable. One student described a no-technology camp she had attended, adding that, if she had to go a week without her phone, “I would be at peace.”

And when it came to how they use technology to pursue health, the students displayed the kind of savvy that had the audience swooning: they went to high-quality online resources, fact-checked what they found, and sought medical attention when necessary. One student with significant foot pain said she first called her mom, then searched online for information, and THEN went to the campus health center. She said that her online research calmed her because she was pretty sure she was dealing with a ganglion cyst. Her doctor was amazed to confirm the diagnosis, but the student laughed: “How did I know? I Googled it, of course.”

The “mobile difference”

Pew Internet research shows that when someone has a mobile device connected to the internet, they are more likely to share, to forward, to create, and to consume online information, from text to photos to videos. They are more likely to participate in the online conversation about health.

Just like peer to peer file sharing transformed the music industry by allowing people to share songs, peer-to-peer healthcare has the potential to transform the pursuit of health by allowing people to share what they know and connect with other people.

Cathy Thomas, of AIDS.gov, shared another “mobile difference.” People who search the AIDS.gov site from a mobile device use much more specific terms than those who search from a desktop or laptop. Mobile seems to make things personal, immediate, and specific.

We are just beginning our journey to integrate social tools into health care. Even people who recognize the potential of these tools are daunted – there are so many unknowns. What the Pew Internet Project hopes to do is reduce the number of unknowns so policymakers and community groups can make decisions based on facts, not conjecture.

What about apps?

Fully half of U.S. adult cell phone owners now have apps on their phones – those software programs which allow you to get updates on topics like the news, weather, sports scores, or stocks. Some apps help people track or manage their health – about 1 in 10 cell phone users have a health app on their phone.

What about Facebook?

Half of American adults and 80% of online teens use a social networking site – and the vast majority have a profile on Facebook.

The Pew Internet Project’s report on social networking sites found that, contrary to fears that technology isolates people and has a detrimental impact on society, Facebook users are more trusting than other people. Facebook users have more close relationships and get more social support than other people do.

We uncovered evidence that social life online does indeed have a positive association with a healthy social life offline. We are building networks online that we tap into when we need help or advice.

What about chronic disease, which disproportionately affects communities of color?

People living with chronic conditions like high blood pressure, diabetes, lung conditions, heart conditions, and cancer are less likely than other people to have access to the internet.

However, once they do have access, they are just as likely as other internet users to look for health information. We have also identified the “diagnosis difference” – holding all other demographic characteristics constant we find that having a chronic disease significantly increases an internet user’s likelihood to say they both contribute and consume user-generated content related to health.

I want to hear it from someone like me

Pew Internet research also shows that one in five internet users have gone online to find others who might have health concerns similar to theirs.

That percentage is even higher – 1 in 4 – among those living with chronic disease, those who are caring for a loved one, and those who have experienced a significant change in their physical health, such as weight loss or gain, pregnancy, or quitting smoking.

I recommended looking to community groups such as LoveHeals, whose research showed that teen girls want to know who is giving advice about their birth control and STI-prevention options. So peer advisors were trained to create 90- to 180-second videos to let their own personalities shine through.

Raul Posas, of Metro TeenAIDS, shared his strategy for reaching Washington, DC-area teens. He does not take a step without asking a team of teen advisors what they think. Based on their feedback, for example, the organization’s recent bus ads featured campaigns written by teens along with a photo of that teen’s face.

Taking it to the next level

I had a little more time to present at the Federal HIV/AIDS Web Council meeting, so I closed with the following:

The tools are in place. The culture is shifting to expect that people have access to information and each other. There is mounting evidence that connecting patients with each other and with their data can have a positive effect on health outcomes.

But we are still at the early adoption stages. What will it take to bring this to the next level?

Here is a list of potential roadblocks:

pockets of people who are truly offline, which mostly describes people age 70 and older or those living with chronic disease or disability

people who see no reason to engage in their health, who are not motivated to change their behavior or seek treatment

technology that is simply a pain to use

communities and tools which are silos of information – unconnected to clinical practice and unable to connect with each other

both the real and imagined threat of misinformation

a lack of awareness that online communities, information resources, and other tools exist and can help make a difference in health outcomes

And here is a list of potential opportunities:

caregivers who can help someone access online resources they may need to get better care – what we call second-degree internet access

a life-changing diagnosis or other event can prompt engagement – and trigger the diagnosis difference

mobile adoption is on the rise and seems to have an independent effect on people’s engagement online – triggering the mobile difference

technology that is easy to use, that makes engagement fun and even irresistible

technological means to connect silos and let data flow

cultural changes that allow for the connection of silos

the deputization of citizen spokespeople for evidence-based information, increasing the engagement of clinicians in spreading science

mainstream press coverage, word of mouth, and clinical programs that help to spread awareness

At both the Federal HIV/AIDS Web Council meeting and the CommonHealth ACTION event, people came up to me to ask about the dangers of misinformation online. This seems to be a source of considerable anxiety among public health educators.

But I also heard many expressions of hope, excitement, and renewed commitment to take advantage of health information technology.

I’ll end with a quote from Natalie Burke, president and co-founder of CommonHealth ACTION: “We can’t live our lives in response to technology. We must also drive it forward.”

(If you have a comment, please join the discussion at e-patients.net.)

Comments

I think its a very good idea to extend the portfolio and start communicating on a modern way to spread the word about HIV/AIDS so that more people are aware of the danger, especially the younger generation.

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